Autism and the incuriosity of doctors

We've been running around chasing our tails with our girl's epilepsy (which began around 18 months ago and has been getting steadily worse). Major seizures at school have been the biggest problem, and there seems to be a solid connection to Milli's breath-holding. Having booked a paediatric neurologist appointment (the earliest we could get was October), we've been holding our breaths ourselves. Every day she goes to school I have to be sure to keep my mobile phone switched on. There's no real break when any minute could mean a phone call and a pick-up, or perhaps hospital visit.

Seizure frequency was unchanged by Tegretol, though symptoms seemed lessened. About six weeks ago she was fitting every few days.

Then we realised we hadn't been giving her the fish oil and vitamin tonic in some time. I don't know why this fell by the wayside, except that it seemed she was eating well enough (finally) to come off it. The seizure activity began quite some time after our other interventions trailed off, so we didn't connect the withdrawal of supplements with the fitting.

However recently we began fish oil and Hi-Vita (a general mineral/vitamin tonic) once again, and for two weeks there was no fitting at all. This seemed a big change after so many weeks of increasing seizure activity. She had one fit at school (which happened on the day I forgot her fish oil and vitamin tonic dose); these things may be wholly unrelated. However once again it seems she's relating better even outside the question of epilepsy. She's now been back on the fish oil and vitamin mix for about four weeks, and has only had two obvious seizures.

Syringing tonics as well as medication into our girl is no joke; it's difficult and results in mess, and increasingly she knows how to pretend to accept it while moments later spitting it all back. This makes her laugh (or at least it did this morning) but I feel the results may well be worth it.

Now for the funny part: last paediatric visit, my partner and I mentioned that our girl's seizures had markedly lessened, and that this was perhaps due to the fish oil and mineral tonic we were giving. While we weren't claiming a link we were interested to hear if he had any thoughts on the issue, in case this change might hint at whatever may be going on with our girl's seizures in particular—if there's a possible nutritional problem, for instance. The doctor blinked faintly and continued with his discussion of medication and dose.

There's every reason why doctors should be suspicious of anecdotal evidence in general, but with autism it seems the only things that work are anecdotal. As a parent you're either stuck in a useless medical paradigm or you're off-grid. It's unfortunate that medical incuriosity seems determined to keep things this way.

Facebook and the anti-AVN

A few days ago I was looking at my facebook page when I noticed an ad in the right-hand sidebar for a Facebook entity called 'Stop the Australian (Anti)Vaccination Network, a site apparently set up to oppose the Australian Vaccination Network (AVN). (All links are below this post.)

Now I've never actually browsed the AVN (Australian Vaccination Network) page before today, or had any interactions there beyond once 'liking' a post another of my friends had liked (from memory it was something innocuous like a call for better information on adverse reactions, or something like that). I'm not an AVN robot. I've simply been through something that exposes possible holes in our government/corporate chain of statements about autism (what it is, what may cause it and what may help).

Indeed the first time I'd ever looked at an AVN video was when I navigated to Stop the A/AVN! My response to that video was that the woman speaking sounded quite fair and reasonable.

Stupidly, I began to talk on the Stop the A/AVN page about my girl's nightmare, her chelation, the astonishing results (a swallowing turnaround in 2 days; a lopsidedness turnaround in 2 weeks; myriad other turnarounds). I say 'stupidly' because it resulted in a mostly unpleasant discussion and at one point I was effectively called 'friggin' dumb'. One of my comments (questioning whether the page was a Big Pharma troll site) was reported to Facebook, and the entire discussion was swiftly removed.

What I didn't realise is that I'd joined an ongoing war. I was just saying what happened, sharing information I thought others might find interesting. I can't help feeling my discussion was removed from the Stop the A/AVN site because it made sense!

Here is the AVN's Facebook page:

Australian Vaccination Network

Here are a few of the Facebook pages linked to on Stop the A/AVN that run the same or similar campaigns:

Informed Parents of Vaccinated Children

The Real Australian Vaccination Network

Stop the Australian (Anti)Vaccination Network

dividing the spoilers... autism diagnostic changes

Having just read an article on Mercola about forthcoming changes to autism diagnostic criteria (which one expert has argued will mean that many parents of children with aspergers will cease to receive support), I can see another pernicious outcome.

In some ways it's more pernicious, because given our families' social difficulties (child dramas often make going out impossible) and our hectic lives balancing therapy with everything else, we already find it harder than the well community to be politically active in ways that could help sufferers.

Changing definitions is a neat way of saving money, reducing the appearance of an epidemic, and dividing a group that might otherwise become a political force to be reckoned with.

Take your pick which one of those is the more pressing for governments that go down the path of changing definitions...

Whatever happens, we need to continue to call for collective autism spectrum disorder treatment, and research toward (yes, you heard it here first) prevention!

Something to do with gut erosion and heavy metals acquisition causes autism spectrum disorders... But if you call one form of autism 'X' and another 'Y', this commonality is disguised.

Skyrocketing autism rate, still no search for cause...

According to today's Sydney Morning Herald, the number of students in NSW schools who have been diagnosed with autism is now 4 times what it was 8 years ago. (See link at the bottom of this post.)

Not only that, but rates of diagnosed depression and other mental illness among schoolchildren, according to the article, have almost doubled during the same time.

Mental illness aside, this staggering autism increase must surely be awakening questions in the minds of even the staunchest believer in the 'better diagnosis' myth. Could past medical practitioners really have been so ignorant a mere 8 years ago? Could diagnostic differences really have allowed them to miss 3 out of 4 cases?

Even now in Australia, the possibility that autism has environmental causes is rarely discussed in public, and seldom without massive controversy. The certainty with which people declare that autism is a predominantly genetic ailment, and that questioning environmental toxins like mercury (whether vaccinal or not) is wrong, is astonishing when so little else about autism is fully known.

The suggestion that earlier diagnostic methods failed on such a grand scale remains the most curious aspect of the authorised account. Think about it. In order to defend the present system, authorities are admitting that they have comprehensively failed autism as recently as 2003.

Surely if the medical system failed autism in the past, then the system is not infallible now. But instead of failing diagnostically, it may well be failing even more comprehensively at the level of investigation and research.

I wonder how long the 'better diagnosis' myth will last if the rates keep climbing? Will it still be clinging on when the autism rate hits one in two? Or will a majority have finally worked out what seems inescapable to me: that something causes autism?

http://www.smh.com.au/nsw/rise-of-autism-puts-strain-on-public-school-budgets-20111025-1mi5g.html

This autism blog is [maybe not--update] moving... Keep a lookout!

I'm able to log in again, so will keep blogging here... for now. :-)

---------------

Hi there. Apologies for this inconvenience, but I'm having trouble logging in at times. Google data-mining requirements may be clashing with my choice of using a pseudonym for certain aspects of the blog.

However I don't like running a blog that might upset a few commercial interests under my real name. I'm sure most people reading this well-intentioned blog will understand why. I'm very, very smalltime, but you never know how badly folks get irritated by alternate points of view, particularly when they clash with profit goals.

For these reasons I'm looking into moving the blog to a different carrier. That will take time, and obviously it could mean that some viewers become lost. Hopefully that won't happen!

If I can still log in to this blog when I set up the new page I'll make sure to put a redirect so you can chase me up at the new address. Hopefully I can transfer all aspects of the blog including back-posts.

If I don't manage to log in to Google again, then I might ask people to do a general search for 'something causes autism' or any post titles or keywords you might recall. You should be able to track down the new blog that way. However I already own the somethingcausesautism.com domain so I plan to use that to redirect to the new blog... When it's ready.

Apologies for these hassles. The web is becoming more and more difficult to use while retaining some measure of privacy. For those with alternate views to giant corporations it's perhaps becoming even harder... But that may just be a fancy of mine, as a tiny little nobody just trying to have my say.

Best wishes to all, and thanks for reading... Fingers crossed for a smooth transition when I set up the new blog.

And happy data mining to Google.

Mainstreaming autism in the news...

http://autisminnb.blogspot.com/2011/10/autism-reality-check-huffington-post.html

This link is about autism, but it's also about The Huffington Post and the way news ideology changes with ownership. Mainstream news still likes to trot out the theory that autism is just the nth degree of humankind's selection for genius. Those with autistic children born to non-autistic parents know this can't be true and that something else has happened to our children's brains. The strange focus on autism's positive aspects is so pervasive that Early Intervention draws some of its treatment plans from Temple Grandin (serious autism's most public success story). Good on you Facing Autism in New Brunswick for not shirking what's real.

Something causes autism.

When things change...

Stability is precious. When something changes (like last week's grand mal seizure) hope tends to plummet.

Last week at school Milli suffered a significant seizure that began with her dropping to the floor and produced severe convulsions and unconsciousness. When I picked her up within the hour she was barely semi-conscious and not very responsive; she began to vomit in the car and couldn't wake up sufficiently to know it was happening. I had to pull over quickly and hold her head forward so she didn't choke.

Hospital was of course a consideration, but every time she's gone to hospital in the past it's taken hours to be seen. Hours in a waiting room with a normal child are bad enough, but Milli finds any kind of wait unbearable, and I felt it would stress her even further. So home we went, planning to call my doctor and try to slip in between appointments at first chance.

Not a chance. Local doctors have full books (mostly) and full appointment schedules; none of the doctors we see could squeeze her in that day, or the next. With a long weekend ensuing, we didn't manage to find an appointment until a week later.

Ah well. She was groggy all that first day and unhappy and non-contacty for 2 days after that, but by the fourth day she was showing signs of full recovery. Now she's a little more prone to tears than usual, but quite happy and well. Ironically this is doctor day!

What we need to do next of course is work out whether the seizure was a one-off or evidence of full-on epilepsy. Unfortunately over the past six months Milli has also had fits of vomiting (sometimes quite violent) while at school, at a rate of about one per month. It's possible these were a form of sub-seizure epilepsy.

I guess after 3 years without medical investigation and thorough examination (as opposed to the whole pediatric rigmarole: visits; questions; diagnoses; tests) it's time to go back to base for a new assessment. However if she does have fully fledged epilepsy then I imagine we'll be considering drug therapy for the first time. I don't mind that if it's clear that she's going to have regular seizures, but I have to hope there are no brain-deadening side effects. I know Milli is happiest when she's alert; there's nothing she enjoys more than games of chasings and catch and kiss.

So there we have it, a simple round-up of what's been going on, with no major 'what if' or 'how did this come about?'.

Sometimes that's all I'm capable of anyhow.
Something causes autism.